Why are places allowed to not follow the NICE guidelines?

They just don’t like these ones, not quite mean spirited enough towards people with ME/CFS, and no one can make them follow them so they don’t.

 

I'm less certain whether that is actually a problem with the "ME/CFS label" rather than a very general problem of a lack of follow ups and people just being discarded in the medical system once someone has dealt with them in some way that is deemed as appropriate by the system. There will certainly be additional problems faced by pwME that are very problematic but I think there'll be plenty of people with a well-respected diagnosis that are unable to get the attention they would deserve and are discarded in a similar fashion.

I'm have no idea how this can be solved in the case of ME/CFS but it seems rather necessary that every ME/CFS patient should have the option of yearly full-check up, when in reality most have been left unable to see a doctor for years. I doubt things will change until someone very commited steps up to get the ball rolling.

 

I think @Ash has a good point here - I am sure people with ME/CFS are seen regularly by GPs and deliberately not investigated for symptoms that might merit MRI scans because of the diagnosis on the notes. This sort of thing happens all the time and with other diseases too, but I suspect especially with ME/CFS.

The debate arose originally in relation to the NHS not being obliged to fund things outside Guidelines. But I don't think that applies here at all. Someone with ME/CFS should be treated according to guidelines for every possible other condition they might have all the time. That might mostly mean not 'suspecting' MS because the symptoms were not indicative but there would be no applicability of the rule 'not obliged to fund'.

It would be different if the ME/CFS guideline said do not do MRIs in people with diagnosed ME/CFS who have other symptoms but I don't think it says that. Nevertheless, the way these guidelines are written in terms of making diagnosis is often pretty poor in formal decision-making or algorithmic terms. Doctors are notoriously bad at describing how they make decisions. And so there is ample room for misinterpretation.

 

I have a question. I’ve heard people say that clinics in the UK that offered Curitative CBT often rebranded themselves as offering “CBT for management” and did basically the same old stuff. Is there anywhere I can find this. Are there any links someone can send that evidences this? Thanks.

 

Have you excluded Pompe's disease?

 

Doesn't apply to the UK but Hans Knoop very much still "cures ME/CFS with CBT".

When I googled CBT UK the first thing I stumbled upon was this guide by the royal hospital in bath https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf "Whereas the trigger or onset of ME/CFS can be unclear, we know more about what can keep ME/CFS going. The evidence points towards behavioural maintenance factors (activity patterns, sleep) and cognitive maintenance factors (thoughts and beliefs about fatigue). And this is where we can helpfully apply evidence-based treatments, including CBT, to enable the young person to make changes and work towards recovery from their fatigue. There is no medicine or ‘cure’ for ME/CFS. Instead, treatments use largely behavioural methods to bring about changes and improvements, e.g. starting with regulating sleeping patterns and activity levels. This will be explained later in this manual.".

I'm not sure if that is even a rebranding. It all seems the same smoke and mirrors.

 

‘There’s no cure, so here’s how to cure it regardless.’

 

"It can't be cured if you're lazy and don't want to stop hallucinating."

 

Yeah. I’m not sure they claim anywhere that this is CBT for management. That sounds like the same old thing.

Thanks though. Still useful.

 

Very Much Ironically, the Bath Chronic Fatigue service’s BACME page says this:

“We believe that all clinical care should have an evidence base. We therefore only offer treatment that has been recommended by NICE.”

https://bacme.info/services/bath-specialist-paediatric-cfs-me-treatment-service/

 

Well the manual also states that "Psychological therapy be available for supporting people with Chronic Fatigue Syndrome/ME (ME/CFS)... CBT is offered to young people with ME/CFS with the aims of improving wellbeing and quality of life, learning to manage symptoms, and reducing distress associated with having a chronic illness."

But if you read through any of it you see that it's all just nonsense and why should it be any different, they truely believe your illness is caused by your thoughts and that the evidence suggests that it can be cured by CBT, so of course they will "cure you with CBT" independently of that they have to follow NICE or what not. Their opinions haven't changed just because NICE has made changes.

 

Thanks this is useful. Hopefully this will convince my Dad.

 

I don't know which clinics still offer it, only that I still come across posts in social media groups from people receiving CBT. Some are confused, asking if it's normal practice or whether others have found it helpful. Others are grumbling that it's turning out to be a waste of energy.